Pediatrician perspectives on barriers and facilitators to discharge instruction comprehension and adherence for parents of children with medical complexity.

BACKGROUND: High rates of posthospitalization errors are observed in children with medical complexity (CMC). Poor parent comprehension of and adherence to complex discharge instructions can contribute to errors. Pediatrician views on common barriers and facilitators to parent comprehension and adherence are understudied. OBJECTIVE: To examine pediatrician perspectives on barriers and facilitators experienced by parents in comprehension of and adherence to inpatient discharge instructions for CMC. DESIGN, SETTINGS, AND PARTICIPANTS: We conducted a qualitative, descriptive study of attending pediatricians (n = 20) caring for CMC in inpatient settings (United States and Canada) and belonging to listservs for pediatric hospitalists/complex care providers. We used purposive/maximum variation sampling to ensure heterogeneity (e.g., hospital, region). MAIN OUTCOME AND MEASURES: A multidisciplinary team designed and piloted a semistructured interview guide with pediatricians who care for CMC. Team members conducted semistructured interviews via phone or video call. Interviews were audiorecorded and transcribed. We analyzed transcripts using content analysis; codes were derived a priori from a conceptual framework (based on the Pediatric Self-Management Model) and a preliminary transcript analysis. We applied codes and identified emerging themes. RESULTS: Pediatricians identified three themes as barriers and facilitators to discharge instruction comprehension and adherence: (1) regimen complexity, (2) access to the healthcare team (e.g., inpatient team, outpatient pediatrician, home nursing) and resources (e.g., medications, medical equipment), and (3) need for a family centered and health literacy-informed approach to discharge planning and education. Next steps include the assessment of parent perspectives on barriers and facilitators to discharge instruction comprehension and adherence for prents of CMC and the development of intervention strategies.

Reallocating time between device-measured 24-hour activities and cardiovascular risk in Asian American immigrant women: An isotemporal substitution model.

The 24-hour day consists of physical activity (PA), sedentary behavior, and sleep, and changing the time spent on one activity affects the others. Little is known about the impact of such changes on cardiovascular risk, particularly in Asian American immigrant (AAI) women, who not only have a higher cardiovascular risk but also place greater cultural value on family and domestic responsibilities compared to other racial/ethnic groups. The purpose of this study was to evaluate the effects of reallocating 30 minutes of each 24-hour activity component for another on BMI, waist circumference, and blood pressure in AAI women. Seventy-five AAI women completed 7 days of hip and wrist actigraphy monitoring and were included in the analysis (age = 61.5±8.0 years, BMI = 25.5±3.6 kg/m2, waist circumference = 85.9±10.2 cm). Sleep was identified from wrist actigraphy data, and moderate-to-vigorous PA (MVPA), light PA, and sedentary behavior identified from hip actigraphy data. On average, the women spent 0.5 hours in MVPA, 6.2 hours in light PA, 10 hours in sedentary activities, and 5.3 hours sleeping within a 24-hour day. According to the isotemporal substitution models, replacing 30 minutes of sedentary behavior with MVPA reduced BMI by 1.4 kg/m2 and waist circumference by 4.0 cm. Replacing that same sedentary time with sleep reduced BMI by 0.5 kg/m2 and waist circumference by 1.4 cm. Replacing 30 minutes of light PA with MVPA decreased BMI by 1.6 kg/m2 and waist circumference by 4.3 cm. Replacing 30 minutes of light PA with sleep also reduced BMI by 0.8 kg/m2 and waist circumference by 1.7 cm. However, none of the behavioral substitutions affected blood pressure. Considering AAI women's short sleep duration, replacing their sedentary time with sleep might be a feasible strategy to reduce their BMI and waist circumference.

Protocol for a remote home-based upper extremity self-training program for community-dwelling individuals after stroke.

Background: Half of all stroke survivors experience hemiparesis on the contralateral side, resulting in chronic upper extremity (UE) impairment. Remote rehabilitation is a promising approach to optimize the gains made in the clinic to maximize function and promote UE use at home. This paper describes the study protocol for a remote home-based UE self-training program. Design: This was a feasibility study that used a convergent mixed methods approach. Methods: We collected data on 15 community-dwelling individuals with UE hemiparesis after stroke. The study used motivational interviewing (MI) and ecological momentary assessments (EMA) to maximize engagement in a 4-week personalized UE self-training program. The study consisted of three phases: 1) training in MI for the interventionists 2) creating customized treatment plans using shared decision making, and 3) four weeks of UE self-training. Measures and analysis: To evaluate feasibility, we will summarize recruitment and retention rates, intervention delivery, acceptance, adherence, and safety. Quantitative UE outcomes will measure change in UE status after the intervention (Fugl-Meyer Assessment, Motor Activity Log, Canadian Occupational Performance Measure, and bilateral magnitude ratio). Qualitative data (1:1 semi-structured interviews) will capture participants' perceptions and experience with the intervention. Quantitative and qualitative data will be integrated to gain a deeper understanding of the facilitators and barriers for engagement and adherence to UE self-training. Conclusion: The results of this study will advance the scientific knowledge for use of MI and EMA as methods for enhancing adherence and engagement in UE self-training in stroke rehabilitation. The ultimate impact of this research will be to improve UE recovery for individuals with stroke transitioning back into community. Clinical trials registration: NCT05032638.

Acculturation, Discrimination and 24-h Activity in Asian American Immigrant Women.

Asian American immigrant (AAI) women may have suboptimal 24-h activity patterns due to traditional gender role and caregiving responsibilities. However, little is known about their objectively-measured activity. We measured AAI women's 24-h activity patterns using accelerometry and examined cultural correlates of time in sedentary behavior (SB), light intensity physical activity (LIPA), moderate-to-vigorous physical activity (MVPA) and sleep. Seventy-five AAI women completed surveys on acculturation (years of U.S. residency and English proficiency), discrimination, and sleep quality, and 7 days of wrist- and hip-accelerometer monitoring. Linear regression was conducted controlling for age, BMI, and education. We also compared activity patterns across Asian subgroups (East, Southeast, South Asians). On average, AAI women had 33 min of MVPA, 6.1 h of LIPA, 10 h of SB, and 5.3 h of sleep per day. South Asian women had the longest SB and the shortest sleep and MVPA hours. English proficiency was negatively related to MVPA (p = 0.03) and LIPA (p < 0.01). Years of U.S. residency was positively related to SB (p = 0.07). Discrimination was related to shorter (p = 0.03) and poorer quality sleep (p = 0.06). Culturally-tailored programs targeting SB and sleep and integrating coping strategies against discrimination could help optimize AAI women's 24-h activity patterns.

Associations of insomnia symptoms with sociodemographic, clinical, and lifestyle factors in persons with HF: Health and retirement study.

Insomnia symptoms are very common in persons with heart failure (HF). However, many of the correlates and predictors of insomnia symptoms in this population remain unclear. The purpose of this study is to investigate the associations of sociodemographic, clinical, and lifestyle factors with insomnia symptoms in persons with HF. A theoretical framework was adapted from the neurocognitive model of chronic insomnia to guide the study. Data from the health and retirement study were used for the analysis. Parametric and nonparametric bivariate and multivariate analyses were conducted to investigate these associations. Age, depressive symptoms, comorbidity, dyspnea, pain, and smoking had significant bivariate associations with all insomnia symptoms. Race, Hispanic ethnicity, marital status, household income, poverty, and physical activity were associated with difficulty initiating sleep (DIS) and early morning awakening (EMA). Female sex, education, and alcohol consumption had a significant bivariate association with DIS. Sleep-disordered breathing and body mass index were significantly associated with EMA. Multivariate analysis suggested that depressive symptoms, comorbidity, dyspnea, and pain had independent associations with each insomnia symptom. Age explained DIS and difficulty maintaining sleep, and significant interaction effects between age and physical activity on DIS and EMA were revealed. Results suggest that insomnia symptoms are associated with several sociodemographic, clinical, and lifestyle factors. Age below 70 years, depressive symptoms, comorbidity, dyspnea, and pain might be considered as a phenotype to identify persons with HF who are at increased risk for insomnia symptoms.

Daytime sleepiness and napping in nursing-home eligible community dwelling older adults: A mixed methods study.

OBJECTIVES: To describe perceptions and beliefs about daytime sleepiness and napping along with subjective and objective daytime sleep characteristics in nursing-home eligible community dwelling older adults. METHODS: A mixed methods study; we conducted semi-structured interviews and measured sleep variables via Actigraphy, sleep diary, and Epworth Sleepiness Scale (ESS). Napping was defined as >10 minutes; anything less was considered dozing. RESULTS: Final sample (n = 40) was primarily female (85%), Black (100%), with a mean age of 72 ± 9.5 years. Few (25%) reported daytime sleepiness (ESS >10). However, average duration of napping per day was 33.1 ± 11.5 minutes with a nap frequency of 2.5 ± 1.5 naps. CONCLUSION: Our sample napped frequently throughout the day, yet the majority reported no daytime sleepiness. These older adults did not always recognize napping or how much they napped.

Nursing Home Eligible, Community-Dwelling Older Adults' Perceptions and Beliefs About Sleep: A Mixed-Methods Study.

Sleep disturbances are highly prevalent in older adults; little is known about sleep in those who remain living in the community despite qualifying for nursing home placement. We conducted a concurrent, nested, mixed-methods study to describe sleep characteristics and sleep disturbances in this population. Our final sample (n = 40) was Black (100%), female (85%) older adults with a mean (±SD) age of 72 ± 9.5 years. Of these, 35 had objectively measured short or long sleep duration, and 30 had subjectively reported poor sleep quality. Our evidence suggests that sleep disturbances are common in this group, and these older adults had adjusted their expectations and adapted to their sleep disturbances. Given that at-risk older adults may not perceive their sleep disturbances as problematic, clinicians must proactively assess sleep and educate about the importance of sleep. These results reveal modifiable factors with potential to improve health outcomes in this vulnerable population.

Nurses' perspectives: hospitalized older patients and end-of-life decision-making.

AIMS: To explore pressing issues identified by nurses caring for older patients in US NICHE (Nurses Improving Care for the Healthsystem Elders) hospitals, regarding palliative care and end-of-life (EOL) decision-making. Objectives are to (1) identify the most pressing palliative care and EOL decision-making issues and strategies to address them and (2) identify the association of nursing demographics (age, gender, race, education and experience), institutional/unit characteristics and these issues. BACKGROUND: Critical care nurses have an integral role in supporting older patients and families faced with palliative care and EOL decision-making issues. Despite national imperatives to improve the quality of palliative care, patients continue to experience uncontrolled pain, inadequate communication, disregard of their wishes and life prolonging interventions. These contribute to increased hospitalizations and costs. Understanding the prevalent issues is needed to address patient needs at the end-of-life. DESIGN: It is a mixed method study. METHODS: A secondary analysis of the NICHE Geriatric Institutional Assessment Profile (GIAP) database (collected 1/08-9/13) was conducted using the sample of Critical Care RNs who provided comments regarding palliative care and EOL decision-making. Qualitative data were analyzed using Dedoose software. Data clusters and patterns of co-occurring codes were explored through an iterative analysis process. Themes were examined across nurse demographics, institutional and unit characteristics. RESULTS: Comments specifically addressing issues regarding EOL decision-making were provided by 393 critical care nurses from 156 hospitals (x‾ age = 42·3 years, 51% BSN degree). Overarching theme was discordance in goals of care (prolonging life versus quality of life), ineffective physician-patient-family communication, lack of time and unrealistic expectations. CONCLUSIONS: Nurses' descriptions highlight the need for increased communication, staff education and availability of palliative care services. RELEVANCE TO PRACTICE: Palliative care and EOL decision-making will remain a nursing priority as people age and require increased care.

Gender differences in heart failure self-care: a multinational cross-sectional study.

BACKGROUND: Despite a common view that women are better at self-care, there is very little evidence to support or challenge this perspective in the heart failure (HF) population. OBJECTIVE: The purpose of this study was to determine if there are cross-cultural gender differences in self-reported HF self-care and to describe gender differences in the determinants of HF self-care. DESIGN, SETTING, AND PARTICIPANTS: A secondary analysis was completed of cross-sectional study data collected on 2082 adults with chronic HF from the United States, Australia and Thailand. METHODS: Comparisons were made between men and women regarding self-care maintenance, management and confidence as assessed by the Self-Care of Heart Failure Index, as well as the proportion of subjects engaged in adequate self-care. Multivariate comparisons were made to determine if gender explained sufficient variance in HF self-care and the likelihood of reporting adequate self-care, controlling for nine model covariates. RESULTS: The sample was comprised of 1306 men and 776 women. Most (73.5%) had systolic or mixed systolic and diastolic HF and 45% had New York Heart Association class III or IV HF. Although small and clinically insignificant gender differences were found in self-care maintenance, gender was not a determinant of any aspect of HF self-care in multivariate models. Married women were 37% less likely to report adequate self-care maintenance than unmarried women. Comorbidities only influenced the HF self-care of men. Being newly diagnosed with HF also primarily affected men. Patients with diastolic HF (predominantly women) had poorer self-care maintenance and less confidence in self-care. CONCLUSION: Differences in HF self-care are attributable to factors other than gender; however, there are several gender-specific determinants of HF self-care that help identify patients at risk for practicing poor self-care.

Cognitive influences on self-care decision making in persons with heart failure.

BACKGROUND: Despite advances in management, heart failure is associated with high rates of hospitalization, poor quality of life, and early death. Education intended to improve patients' abilities to care for themselves is an integral component of disease management programs. True self-care requires that patients make decisions about symptoms, but the cognitive deficits documented in 30% to 50% of the heart failure population may make daily decision making challenging. After describing heart failure self-care as a naturalistic decision making process, we explore cognitive deficits known to exist in persons with heart failure. Problems in heart failure self-care are analyzed in relation to neural alterations associated with heart failure. As a neural process, decision making has been traced to regions of the prefrontal cortex, the same areas that are affected by ischemia, infarction, and hypoxemia in heart failure. Resulting deficits in memory, attention, and executive function may impair the perception and interpretation of early symptoms and reasoning and, thereby, delay early treatment implementation. CONCLUSIONS: There is compelling evidence that the neural processes critical to decision making are located in the same structures that are affected by heart failure. Because self-care requires the cognitive ability to learn, perceive, interpret, and respond, research is needed to discern how neural deficits affects these abilities, decision-making, and self-care behaviors.

A motivational counseling approach to improving heart failure self-care: mechanisms of effectiveness.

BACKGROUND: Self-care is an integral component of successful heart failure (HF) management. Engaging patients in self-care can be challenging. METHODS: Fifteen patients with HF enrolled during hospitalization received a motivational intervention designed to improve HF self-care. A mixed method, pretest posttest design was used to evaluate the proportion of patients in whom the intervention was beneficial and the mechanism of effectiveness. Participants received, on average, 3.0 +/- 1.5 home visits (median 3, mode 3, range 1-6) over a three-month period from an advanced practice nurse trained in motivational interviewing and family counseling. Quantitative and qualitative data were used to judge individual patients in whom the intervention produced a clinically significant improvement in HF self-care. Audiotaped intervention sessions were analyzed using qualitative methods to assess the mechanism of intervention effectiveness. RESULTS: Congruence between quantitative and qualitative judgments of improved self-care revealed that 71.4% of participants improved in self-care after receiving the intervention. Analysis of transcribed intervention sessions revealed themes of 1) communication (reflective listening, empathy); 2) making it fit (acknowledging cultural beliefs, overcoming barriers and constraints, negotiating an action plan); and, 3) bridging the transition from hospital to home (providing information, building skills, activating support resources). CONCLUSION: An intervention that incorporates the core elements of motivational interviewing may be effective in improving HF self-care, but further research is needed.